AN/VS "flare ups"

[Dippy1988]

Hi there, i'm a 34 year old male who was diagnosed with a AN/VS in May 2022. I'm currently on watch and wait as the tumour is only the size of a garden pea.

My symptoms in July 2021 at first were extreme fatigue, dizziness, loss of hearing, tinnitus and headaches... this subsided after about 2 weeks (apart from the hearing loss) and I thought it was just the flu.

I have managed to live a reasonably normal life since then, however this week I have had another "flare up" where I am unable to work, drive, go to the GYM or just live a normal life. I have a headache which has lasted most of the day (which has now started to subside). Does anyone else have "flare ups" ? as I haven't been able to find much online.

I was hoping if anyone had any ideas or ways to deal with these symptoms as nothing I do seems to help?

Thanks all

Adam

[Bizzyhazel]

Hi dippy Sorry to hear that you got an .

It’s a tough one really and such a shame that your so young too . I’ve suffered with all that you’ve mentioned for over 3 years .

Try and listen to your body , if it’s needs to sleep then sleep .

Keep as healthy as possible and more importantly keep happy .

I’m hopefully having surgery for mine this nxt tues at Salford .

Keep talking with the lovely people in this site too .

Take care 👍👍🌸

[Dippy1988 in reply to Bizzyhazel]

Hi Bizzyhazel

thank you for your response - I think I need to do what you have said.

I have not been listening to my body or my mind which hasn't helped me. I have just buried my head in the sand to act like the tumour isn't there - unfortunately its something I must deal with physically and mentally!

Goodluck next Tuesday in Salford, I hope it all goes well and you recover quickly! I don't have another scan until November at Kings in London.

Adam

[zeekay]

Hi Adam, sorry to hear you have a VS . It can be a long journey but it can be managed the best you could. You may have already picked up that this “thing” -I call mine DizZee – impacts us all differently. But these groups help us to share how we can manage the symptoms, best we can as well as where you can get further info. Best of all I sometimes feel inspired by other peoples journeys and not feel alone in mine.

I was diagnosed with a 4x3mm VS in 2013 at age 50. Was very ill for at least 18 months with dizziness, vertigo, imbalance and a heavy head. During this period, I was offered Vestibular Rehabilitation Therapy (VRT), to help settle my symptoms and as the consultant put it then – to “retrain my brain” to get used to doing “normal” stuff again – like communicating better with my movement and balance organs. I was on watch and wait with 6 month and then annual scans.

In 2018, I had a “flare up” and became very ill again for just over a year during which period I again request VRT – it helped. But still at this point my VS was still considered very small for treatment or surgery. I hope your flare up settles down really quickly. We are all different. I can remember the ENT consultant saying he cannot understand why I was this ill with a relatively small tumour compared some of his patients. Well, that conversation was a conversation and a half Lol. I told him others did not have my name, DOB or look like me on the inside or outside. and that I bet their tumours were not shaped like mine. We laughed about it. But at this point I was insistent on a referral to a specialist hospital which was actioned immediately and I am thankful it happened.

I think all you can do at this stage is let your GP/Consultants know how ill you are and explore the possibility of VRT if SRS or surgery is not possible at this time, or see what else they suggest. For me, apart from what I called the dizzy pills which made me sleep and calm down but not much else, the VRT and learning how to manage my symptoms has helped. I have had an almost full life, just happy to let go of the things that give me stress. I am in a calm happy place and I believe this is because I have been intentional about looking after my well being.

My tumour stopped growing for about two years and then accelerated growth in a very short space of time and though still considered relatively smaller (1.5cm), consultant in Oxford was concerned about the accelerated growth so a decision was made in February 2022 to treat. So, I am 2 weeks in since Radiotherapy treatment - 12 July. And besides the expected symptoms/side effects after treatment, I am doing ok.

I really do hope this flare up settles really quickly and that you get better soon. Thinking of you and wishing you all the best. please do look after yourself.

Sorry for the long post.

Zee

[FatBenny]

Hello Dippy! I had dizziness in April 2021, and deafness in July 21. A massive flare up in Nov 21 (when my dad died), then fine until June 22! The current flare up happen soon after crashing my car. Try and remember if stress was a factor when it got worse… no imperical evidence, just circumstantial, but worth a look!! Good luck with it. My tumour is about a tic-tac ! It is bruised and has bled in the past. Are you getting regular MRIs? I highly recommend mr Irving at Birmingham.

[Dippy1988 in reply to FatBenny]

Hi there Benny, you know what come to think of it... I have been extremely stressed at work recently, I have been working very long hours dealing with quite a lot of pressure (not from anyone in my company) but other contractors. I have quite a stressful job. But I think you are right, stress must be an underlying factor to these "flare ups" 99% of the time I feel completely normal, like the tumour isn't even there, but these flare ups are intense!

Since I found out I had the tumour I have stopped drinking, vaping and anything remotely unhealthy. I still have a beer here and there but I was drinking quite a few on a Friday night after work. I just want to give my body every fighting chance which is why I joined the GYM.

I had an MRI in May and not having another till November this year. I am currently under Kings College Hospital (Skull base MDT) in London which is only about 40minutes from where I live. I have called them today to update them with my symptoms and they are going to call me back next week, but I have gradually started feeling better again. Hopefully can get back to some normality soon.

Thank you (and everyone) for taking the time out your day to reply as it genuinely makes me feel better that I'm not alone in this!

[Zhaleh_TBTC Administrator]

Hello, thanks for your post and I'm sorry to hear you're having a tough time managing symptoms and side effects. We know that fatigue and other side effects can be really hard and we do have some information and strategies to help coping with them here: thebraintumourcharity.org/l...

In terms of tracking how you’re feeling, you may also find it useful to download our BRIAN app, which will allow you to monitor your symptoms and includes features such as logging day to day wellbeing, sharing data with your clinical team and adding in appointments. You can read more about BRIAN here: thebraintumourcharity.org/l...

If you would like any additional support, or just want to talk things through, you can give us a call on 0808 800 0004, Monday – Friday 9-5. Alternatively, you can email us on [e-mail]. Warm wishes, The Support Team.

[Margyr]

Hi Adam mine sounds much like yours amBetween a pea and small grape !!! Half the hearing gone in ear noise all the time and the tiredness don’t know anyone with one treatment in Ireland very bad don’t know weather to travel to look at it somewhere else